Revlimid for Multiple Myeloma User Reviews

• Iow...
• October 31, 2013

"After several cycles of Velcade, Revlimid, and a steroid, my doctor switched me to Revlimid alone. I have had no side effects of note. The Velcade really knocked me out. Shortly after a stem cell transplant, I had a small blood clot that caused double vision, but that resolved itself in about a month. Now I take a blood thinner (Jantoven). Two and a half years after my transplant, my myeloma is extremely well-controlled, and I'm guessing that Revlimid is a big part of the reason. The main issue I have with Revlimid is the astronomical price; my insurance pays 75% of the cost. A grant from a nonprofit foundation has been a huge help in covering the out-of-pocket."

• Anonymous
• January 19, 2013

"Revlimid significantly reduced my cancer levels, also reduced my pains so I could stop taking my Percocet. At this time I just take extra strength Tylenol. The bad side effect was I developed a bad blood clot in my left leg. I am now on a blood thinner."

• Ren...
• Taken for 10 years or more
• January 21, 2021

"I have been taking Revlimid 10 mg as maintenance after my stem cell transplant in 2011. I have had some side effects such as fatigue and IBS. I am still in remission 10 years later. My oncologist is considering taking me off. I'm nervous and haven't decided what to do. My fear is that my cancer will come back without the Revlimid. I also realize the seriousness of the possibility of more severe side effects happening the longer I continue to take it."

• kre...
• Taken for 1 to 2 years
• October 20, 2014

"I have been on Revlimid for about 2 years, and the result is my cancer has been at a low level and controlled. I have no side effects that I am aware of. I do, however, think this medicine is terribly expensive."

• Big...
• April 27, 2018

"I have been on Revlimid for about 5 years. Initially, one 25 mg for 21 days with 7 days off and repeating 28-day cycles. For the first 3.5, I also took dexamethasone with it but stopped that with no ill effects. After one more year, my doctor cut the dose to one every other day with no negative result. So far, so good, all this followed a transplant about 14 years ago. While the Revlimid leaves my hands a bit shaky, there is no real loss in quality of life."

• Sam...
• Taken for 1 to 2 years
• January 25, 2020

"My daughter was taking Revlimid for 18 months with good results as that Kappa level went to almost zero. She looked so good, her hair had grown back, kept her job, and was so happy. Suddenly, she became weak, was unable to stand, and tests in the ER indicated she had leukemia. She died in 4 months. I was told that her taking Revlimid led to the leukemia. How can this happen so quickly? It is listed as a side effect."

• Mar...
• Taken for 5 to 10 years
• January 27, 2024

"I have been taking it for 8 years now! I’m currently in remission! I have to continue to take it to remain in remission! My dosage is 15 mg for 3 weeks, then off one week per cycle! I have side effects, especially when I first take it in the morning! No complaints, as I realize how blessed I am to be in remission!"

• Anonymous
• Taken for 1 to 2 years
• January 15, 2024

"My experience seems to have been a good one. My doctor pronounced a complete response with the treatment for the multiple myeloma. I haven't had any side effects that can be attributed to the drug, Revlimid."

• VAj...
• Taken for 1 to 6 months
• October 6, 2013

"The first 21-day cycle went really well. No side effects or not feeling well. But when I started the second cycle, within the first day, I was getting severely ill. I couldn't get up from bed. Dizziness, not being able to focus. My whole body was covered in not a red rash, but blood-red raised welts. I stopped the treatment per my doctor."

• Ell...
• November 4, 2015

"My sister had multiple myeloma, she took this drug for about 2 months. She developed a blood clot in her heart and died 2 days ago from a cardiac arrest while she was at the hospital. Her quality of life before this was zero while taking Revlimid."

• Tri...
• Taken for 1 to 2 years
• January 3, 2018

"Diagnosed with Multiple Myeloma (MM) in October 2015. Starting in December, I received radiation treatments plus Velcade along with Dex. In the summer of 2016, I received Auto SCT at MD Anderson (a truly wonderful hospital), and have been on a maintenance dose (5 mg) of Revlimid ever since. I take it every day for three weeks, then off one week. My numbers have been slowly improving with every monthly visit to my oncologist. So in that aspect, it appears the Revlimid is doing its job. On the downside (and this is only minor), I tend to experience a lot of fatigue for the last ten days of each 'on' cycle."

• Jas...
• Taken for 2 to 5 years
• January 17, 2018

"Even after induction chemo and 2 autologous stem cell transplants, I had a good response but was not in remission. Within a few months, myeloma started to worsen. Was started on 15 mg for 21/28 day cycles. I was in remission within 4 months. That was 3 1/2 years ago. The only side effect is irritable bowel, and I think it is the cause of a metallic taste in my mouth. Anyway, thanks to the affordable online pharmacy that sells the generic drugs, prices only 2% of the brand one."

• con...
• Taken for less than 1 month
• April 24, 2019

"My dad has been taking this Revlimid drug for the last two weeks, and his quality of life has significantly decreased. The only thing that changed within the last two weeks was the Revlimid. He was much more functional when he was on chemo!"

• WGT...
• Taken for 2 to 5 years
• January 14, 2024

"No real problems with the higher dose except fatigue. After stem cell transplant (2 years ago) and on the low dose for maintenance, I still have fatigue, brain fog, had a bilateral rash but that only lasted for a few months, constipation but is controlled by stool softeners. Lower chest upper abdominal tightness, especially when exerting myself. It limits the amount of walking I can do."

• Sus...
• Taken for 2 to 5 years
• April 25, 2024

"I was diagnosed in my 70s. My treatment included Revlimid at 25 or 30 mg daily. Personally, I consider Revlimid a miracle drug. Within 6 weeks of treatment the pain went away almost overnight. My oncologist said the Revlimid was the drug that caused my pain to stop. I am talking about the stabbing, sharp pain that is the worst. Three years later that pain has not reappeared. I currently am taking 10 mg daily. Whatever the side effects of Revlimid, nothing is better than stopping that pain."

• Cyn...
• Taken for 2 to 5 years
• April 11, 2024

"I have been on 10 mg for 5 years. I recently started having atrial fibrillation. They just cut the dose to 5 mg. I don't know if that will change this. I had to get a pacemaker. I get sleepy from Revlimid and also get hot flashes. My platelets are at the bottom of the range. I struggle with anemia. I am usually tired. I also have amyloidosis. I never got to a complete response. I achieved a very good partial response after induction that included Revlimid. I had a stem cell transplant."

• Bob...
• Taken for less than 1 month
• October 10, 2021

"Prior to MM diagnosis, 8 months of extreme pain in right shoulder, moving to left shoulder, hips, and shins. Very painful, constant moving from area to area. Was diagnosed with arthritis, prescribed Diclofenac Sodium 1% gel (prescription). Instead, used a small amount to the area of pain, relief was almost instant. Discovered CKD III disease, referred to oncologist on 7/27/21, admitted to the hospital the same day, bone marrow biopsy, markers indicated confirmation of MM. On 8/2/21, first chemo prior to discharge from the hospital. Weekly chemo scheduled and started 200 mg twice daily of Acyclovir, weekly IV mix of bortezomib and cyclophosphamide. Velcade stomach injection. Oral 40 mg dexamethasone on IV day. Stopped IV on 9/8/21. Continued weekly Velcade stomach injection and 10 mg Revlimid on 9/11/21, take one capsule for 14 days, stop for 7 days, and 40 mg dexamethasone on days 1, 8, and 15 of the cycle. Now: Revlimid mid-cycle #2. Side effects include some fatigue. Previous pain moving joint to joint is gone."

• Ste...
• Taken for 1 to 6 months
• November 8, 2024

"I suppose I tolerated the Revlimid 25 mg okay during the few months before having a stem cell transplant. I did, however, experience times of fatigue and a general feeling of sickness, not to the stomach, but as if I had the flu. Now, 1 year later, I just started a maintenance dose of 10 mg. Same general not feeling well symptoms, but I had forgotten about the itchiness on my scalp, no rashes, just crazy itching. I still have an appetite and get around okay."

• Vir...
• Taken for less than 1 month
• August 21, 2016

"I had 2 blood clots as a result of a hairline fracture in my ankle. Consequently, I was given Coumadin on April 14. I started Revlimid on May 7. On May 25, I had a new blood clot even though my INR was 3.7 - in range to prevent clotting. I was hospitalized and missed a Memorial Day party. The doctors were baffled and thought the Coumadin was not effective. I disagreed, stopped Revlimid immediately, and stayed on Coumadin. I flew to and from Italy this month with no blood clotting...the food was fabulous although I miss some eating great salads. (Kidney issues prevent the other blood thinning remedies)"

• Bob...
• Taken for 1 to 2 years
• December 17, 2022

"See previous comments; 10/2021; taken for less than 1 month. Kappa free lite chain was 5.774 on 8 July 2021. After each cycle, the numbers dropped, and on 6/28/22, Kappa numbers were 15.7. I have been in the mid-normal range since. Dosage adjustments from 10 mg to 15 mg due to neuropathy. Currently, monthly injections of Xgeva, Daratumumab (Darzelex), and 7.5 mg Revlimid or Lenalidomide cycle 21/7. Goals not reached at this time, continuing with monthly injections and 7.5 mg 28-day cycle."

• don...
• Taken for 6 months to 1 year
• January 25, 2019

"Took Revlimid 25 mg per day as maintenance after auto stem cell transplant for multiple myeloma. It worked to keep my spike down for about 12 months. I consider it to be less than satisfactory for me, though it works longer for some."

• Ray...
• Taken for 2 to 5 years
• May 28, 2024

"Overall, the benefits by far outweigh the side effects. I’m on 50 mg daily for 21 days on, seven days off. On average, the side effects I have experienced have been mostly minor, things like muscle spasms and cramps. The most annoying side effects have been muscle cramps up and down the side of my left leg. Possible but it turned out to be normal."

• Ano...
• Taken for 5 to 10 years
• March 30, 2025

"First time I took Revlimid, I also took a steroid. I was taken off the steroid when my face turned red till it finally got up to my eyes. Taking Revlimid then on, I did not have any reactions. On it for 10 years, I was taken off when my m-protein was at 0.2 standstill. Off for 6 months, I was started on lenalidomide and had terrible itchiness! I waited to be able to get the next refill of Revlimid. I had such a good response till 2 capsules of Revlimid were taken this time, I have little spots rather than the large areas I had on lenalidomide."

• Dem...
• Taken for 1 to 6 months
• March 30, 2022

"Worked like a miracle when first diagnosed with multiple myeloma. Was in remission in a couple of months."